Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Hello all. I just wanted to introduce myself. I hope I'm doing this the right way by adding a new topic. I'm still trying to figure out the website. I've read a lot of the previous topics and have learned much from you.
My journey with being diagnosed with acromegaly started last November with dizziness problems. I went to my general doc who sent me to ENT and said I didn't have veritgo and passed all his tests who then sent me to Neurologist who said I probably had anxiety and started me on prozac but did get an MRI. About a week later I received a voice mail message from some "perky" woman at his office that I had a pituitary tumor and they would refer me to an endocrinologist. I got this message on a Friday so as you can probably guess I was frantic all weekend looking this up online. She did not mention how big the tumor was and with my headaches I just knew it was huge. After not being able to contact them the following week I went to hospital and got my own copy of MRI report and found the tumor was only 5x7mm. Luckily I was referred to a wonderful endo doc. who immediately referred me to UVA pituitary clinic. I had transphenoidal surgery on Sept 23 without any major problems other than my sodium did drop 1 week after which was scary for a few days. I will hopefully be returning to work in a couple of weeks and my labs this week were good. I have appt. in Nov for another MRI and follow up with UVA. I still have lots of muscle weakness and occasional headaches but hope this will improve. I am so thankful to have found this site as I know that this is only the beginning of my journey and it is so nice to find others who understand the uncertainties of this diagnosis and the emotional roller coaster that goes with it.
My journey with being diagnosed with acromegaly started last November with dizziness problems. I went to my general doc who sent me to ENT and said I didn't have veritgo and passed all his tests who then sent me to Neurologist who said I probably had anxiety and started me on prozac but did get an MRI. About a week later I received a voice mail message from some "perky" woman at his office that I had a pituitary tumor and they would refer me to an endocrinologist. I got this message on a Friday so as you can probably guess I was frantic all weekend looking this up online. She did not mention how big the tumor was and with my headaches I just knew it was huge. After not being able to contact them the following week I went to hospital and got my own copy of MRI report and found the tumor was only 5x7mm. Luckily I was referred to a wonderful endo doc. who immediately referred me to UVA pituitary clinic. I had transphenoidal surgery on Sept 23 without any major problems other than my sodium did drop 1 week after which was scary for a few days. I will hopefully be returning to work in a couple of weeks and my labs this week were good. I have appt. in Nov for another MRI and follow up with UVA. I still have lots of muscle weakness and occasional headaches but hope this will improve. I am so thankful to have found this site as I know that this is only the beginning of my journey and it is so nice to find others who understand the uncertainties of this diagnosis and the emotional roller coaster that goes with it.
Yes! I am sure you feel allot better and safer too, and it is a blessing been looked after by a good and caring professinal team. and I always tell my team so and remind them that they are my angels hear on earth.
Keep a diary for yourself on how and what you feeel and when it will help you and the proffesionals to help you.
Good luck, be well and positive too.
Love & Light orit
High School Musical
Welcome to the site, and thank you for letting us know of your journey with Acromegaly.
It's wonderful that we have such gifted surgeons!
I felt a bit strange for a few weeks after surgery, but everything started slotting into normality in the end.
Trys
www.acromegaly.wordpress.com
My face generally looks less puffy, vertical wrinkles on my forehead have gone down substantially, less bags under my eyes.
I chase my wife around the bedroom a bit more now, and when I'm quick I manage to catch her sometimes too. Still trying for offspring.
I have no tingling in my hands any more (except very very occasionally).
My hair is softer. I think it's suddenly getting more grey hairs, but that could just be age (41) - it's almost all jet black at the moment.
My skin is less oily. I'm more relaxed and take things with more joviality, and more in my stride now. More confident, and less worried of what I say and less offended of what people say to me. My jokes are getting very corny. As a result I work better now, and come up with more credible innovations in what I do as an engineer.
I will remain with a typically "acromegalic" face I believe, but this is how I am, and I'm more than content with this. My lips don't get cracked any more.
All these changes are subjective, things were good for me before all these things happened anyway.
I do hobble a bit with my left hip some days, it comes and goes, it doesn't bother me. I have prognathism (lower jaw), but I cope well with it.
Blood pressure is much better controlled now (on meds).
Things are good! You have lots to look forward to!
Trys
www.acromegaly.wordpress.com